How does your family/friends support you in your illness or how would you like them too

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MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/19/2009 5:49 PM (GMT -7)   
I am looking for things that people do right in how they support someone who is ill.  Or at least ideas of ideal support we have all had people in our lives that could use some help in find ways to support us, if we could say anything to help them along that path, what would those offers of help be?
 
i.e. saying something like "How can I help?"
Can I give you a ride to church?
grocery shopping or at least finding a way to deliver groceries?
Rides to the Doc?
Accompany us to the Doc?
My little bro brings me real jello in the hospital.  It is a little thing, but it helps me alot.
 


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/19/2009 6:52:18 PM (GMT-6)


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 7/19/2009 6:26 PM (GMT -7)   
It means alot to me when my husband says, "I hate that you have to go through this." That little thing means the most to me. And giving me the freedom to just say no when I don't want to go somewhere or do something when I'm feeling bad without having to explain.
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg.
 
I live by faith and not by sight....


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 7/19/2009 6:42 PM (GMT -7)   
I think what meant the most to me was when I first got sick and my ex boyfriend would take care of things for me, like run a bubble bath for me and let me relax while he would go out and run errands for me so I could have some time to unwind. My friends and family are great though, it means a lot to me when people I know take the time to research my condition and start asking me questions about it. A new guy I'm seeing is also driving me to the hospital tomorrow (which takes about an hour to get to), so that really means a lot to me as well.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 7/19/2009 7:53 PM (GMT -7)   
What means the most to me is that my parents (though I'm not a kid anymore) show up at the hospital without being asked if they know I'm heading to the ER. They don't have to do anything or say anything, but having someone there means a lot to me. Sometimes I tell them they don't have to come, but they show up anyway. It doesn't matter what time it is, or if they have to work the next day, but they're always there for me. It's nice just to have someone there when you're waiting just so you're not alone. I've seen from working in the hospital that a lot of people in the ER are alone, and I am so grateful that I have people to depend on.

My parents also bring mac & cheese and mashed potatos to me at the hospital once I'm allowed to eat...after days of clear liquids it's the best thing to eat!

I also appreciate that even though I'm always sick (with something it seems) my friends always ask me how I'm feeling, and they listen to me whine and complain, and make me feel loved and cared for by checking back with me to see if things are improving.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/20/2009 12:11 AM (GMT -7)   
Bringing cards and flowers, even if it is your billionth trip to hospital, just to show that they still care and haven't lost interest.

Offering to help with laundry or bring you edible food or other important bits and bobs from the outside world, if you're in for a long time and don't have anyone else to do it for you.

Actually talking, empathising and listening, instead of brushing you off or making pointed comments about how other people have it worse than you... along with all of the other conversational clangers that the healthy tend to drop into their conversations.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/20/2009 2:16 AM (GMT -7)   
When I was first diagnosed and in complete denial, my other half did alot of reading and came home with bags of bits and pieces that he read could be helpful (probiotics etc), in fact even now he worries more that I do, but makes sure that I keep a sense of humour about it all. In fact I'm very lucky my whole family have been fab. I really fell for people going through anything like this without support.
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (Doc unsure if it's Crohn's).
2 fistulas, 1st op july 2009, now the proud owner of a seton, ?awating sugery for 2nd fistula.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, Probiotics, zinc supplements, Cod liver oil.
Past meds: prednisolone, colifoam ememas.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 7/20/2009 5:22 AM (GMT -7)   
talking and listening have been the best for me. I didn't talk about my CD much until I met my husband. The best things he says are
"Do you want to explain that problem/hurt/feeling more?"
"Can I get you a blanket?"
"I wish you did not have to have CD because it seems unfair to you"
Is this something you should go to the doctor about?---He asks because he knows I won't go without encouragement unless it is terribly bad.

He also has learned that somethings he just does and doesn't ask. He turns out lights when I am curled up cramping, he goes to the store for the gatorade I requested and brings home everything else I ever want when i am sick just in case, he gets out of the way when I srpint for the bathroom.

The best thing friends can do is just not turn away when i am not feeling good.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/20/2009 6:29 AM (GMT -7)   
I am blessed with the most amazing husband, I don't know how I ever would have survived the last 11 years without him. My husband massages some part of my body EVERY single night. He was there holding my hair back when I was puking my guts out due to an obstruction. He has done the wet/dry packings in my reopened incision because I had gotten an infection in it. He is there making sure I am at least getting fluids when I don't want anything to eat or drink. He goes to a little restaraunt down the street that has a great chicken soup for me when I am sick. I could go on and on, but will stop here. Great post!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 7/20/2009 9:15 AM (GMT -7)   
My first husband was completely oblivious to my disease. I pretty much just dealt with it alone. My husband now, however, has been wonderful. He comes to all my appointments with me because he remembers to ask all the important questions. I can share any and all of my symptoms with him, no matter how gross and disgusting they may be, and he listens and offers suggestions to help. He comes with me to my Crohns support group which I just found about 8-months ago. This same question came up in our group and we all seemed pretty fortunate to have someone in our lives who provided the support we need. Its my hope that everyone on this forum can find a good support person. It makes all the difference in the world.
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Levsin, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort

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